Continual Presence at the other end of life

Sitting with my dying niece tonight, I didn’t want to leave her. But my son had to be picked up and I hadn’t seen my husband in daylight for a while.

We’re nearing the final vigil time. It is hard to leave and hard to go back. Each time I approach her home my stomach tightens because I don’t know how far she may have slipped away from us since the day before. But there is a grace and a mystery to this that has many correlations to birth care.
Had to come back around to birth, didn’t I? Even on the topic of death, I think about birth. Seems natural to me.

Dr.s Kennell and Klaus talked to us doulas about the importance of continual presence: Being with the mother from the time she calls us to her. Most often that is when she has begun early labor. Potty breaks are accepted, but meal breaks are far too long.

I haven’t been able to be with Meg continuously. I know I will when her breathing becomes labored and shallow. That is in the last few days. But now is when she needs it. Each moment is so precious. But I can’t stop the clock for my family, even for myself.
Sometimes I just got to get outside and walk, or talk with other midwives about anything about the beginning of life, or make a bead for a Christmas gift. I’m a little upset about myself. I have stayed at many births for days. This birth, back into spirit, though, has been months. This level of care, a few weeks now.

Yesterday, Meaghann hadn’t said virtually anything all day. Later, as my sister and I dressed her for bed, she opened her eyes and clearly said, “Gail, are you still here?”

How I wanted to stay at her side. But I don’t want to, too. She is still independent in her mind and she doesn’t have much patience for being fussed over. It can make her crabby with us. Especially if we look worried. I get antsy, want to sleep in my own bed, get something ready for Christmas, or take time for a prenatal or postpartum visit.

Meg has wonderful support, from family, friends and hospice! Her mother is loving and attentive, they’ve been living together since Meg’s 2nd brain tumor, 2 years ago. She has a loving sister who comes frequently; a brother who spoke to her so tenderly tonight. She has help from home hospice, and since Thanksgiving, a dear old friend of mine, Juli Kampmeyer, has come in to give palliative care. In college, we were going to go into nurse-midwifery together. Then, I held a panel of midwives for a community event and from it chose homebirth midwifery, and Juli went into Human Services and then went on a journey that led to home care for vulnerable people, including the dying. She is our midwife. She is our doula.

You readers who are doulas and midwives will have experienced times that loved ones of birthing women ask if you would help them when they have a baby. Well, I actually asked Juli if she would help me when I die.
Dying couldn’t be any better than by having Juli by my side. ! Ok, this is the kind of humor you get after months of facing the death of a loved one, and all the earthy practicalities of ongoing care involved with someone who is losing physical abilities.

Meg has someone with her 24/7 now, of course. This 3rd tumor, advanced to a “glioblastoma multiforme,” is pressing on her motor nerve and she can’t do what she intends to do. Mentally she is often quite cognizant, but she has trouble speaking now. My work as a doula helps me perceive her needs fairly well.

Again tonight, Meg began to talk after a fairly silent day. Her mom teased her about eating chocolate after her teeth were brushed, and Meg smiled her crooked grin.
While being dressed for sleep, Meg’s eye caught a decorative plate on the wall and she said, “I love that plate. I gave you that plate.”
Kathy and I looked at each other. We haven’t heard this many words from Meg for several days! Kathy said, “And I love the giver of that plate.”
Quickly, Meg quipped back, “And I love the Givee!”

When later, I told her I had to go, she watched me begin to back up from her bed side. She said, “I love you, Gail.”

A wave of sweet emotion hit me like a wave on the beach. A life time of love pours through a simple sentence. Love for your life ahead. It can send you dancing above the pain.

There are many levels in dying, like labor. You can focus on the pain or you can focus on the love. Being one of the doulas for my niece, as she winds down her life, is a walk in God’s grace; peace beyond understanding. Brutally tender and surprisingly transcendent.